Tag Archives: writing

The Cost of Caretaking

1 Jul

I awake exhausted, barely able to get out of bed. Everything hurts. Spasms roil through my gut. Still, I must get up and take care of Chuck, because who else is going to do it? I don’t feel that way every day, but in the course of the last year, I have suffered bouts of increasing frequency and intensity. When I do, I can barely function, another challenge on top of an already challenging life.

For years after Chuck’s stroke, I was miserable. At some point, I finally accepted reality and decided to change what I could, which was my internal landscape. Being unhappy is easy, because doesn’t require any work. Not being unhappy, however, takes work, and I have invested tremendous effort in the endeavor. I am pleased to say that I have largely managed to succeed. However….

My health was compromised due to the years of extreme stress. I suffer several debilitating autoimmune disorders: Irritable Bowel Syndrome (IBS), a chronic condition that causes painful spasms in the small intestine; fibromyalgia, which causes widespread, chronic pain, fatigue, sleep and mood and cognitive disorders; and possibly celiac disease. Since the root of each is inflammation, one can trigger the others. Flare-ups can last for days.

I can manage my symptoms, to a degree. Controlling stress is paramount, because it can trigger flare-ups. I maintain a very restrictive diet, which entails avoiding certain “trigger” foods that contain FODMAPs. These include a wide variety of fruits, vegetables, sauces, dressings, mixed spices, bread, cake, cereal, crackers, pasta, almost any processed food and many more. I willingly forego eating what I know will make me sick; the problem is that they often lurk in other, seeming “safe” foods. One slip and I am sidelined for days.

I know I don’t look sick, which is a problem with having “invisible” illnesses. In fact, I look very healthy: I practice cardiovascular exercise and yoga daily, when I’m not ill, and maintain a good weight. I eat well, and don’t smoke or eat meat. I’m sure many people who think it’s “all in my head” or who sympathize but don’t really understand how debilitating these conditions are.

My doctor, Doug, has been very helpful. He referred me to one gastroenterologist, then another. Neither addressed my concern, which was how to deal with the IBS; they wanted to order an endoscopy to “rule out celiac.” I, having researched extensive research on IBS, requested a test for Small Intestine Bacteria Overgrowth (SIBO), but both GI doctors dismissed that idea. I declined the endoscopy and got a home kit to test for the SIBO; it came back positive.

Doug then put me on Xifaxan, an antibiotic indicated for IBS that kills only the bad bacteria in the gut and that I had read about in the course of my research. After starting the treatment, I experienced four months, symptom-free. Then I got sick again. For two days, I was waking up exhausted and barely able to drag myself out of bed to take care of Chuck. My lower abdomen was seized with cramps and my body ached. I experienced extreme “brain fog.” In short, my illnesses compromise my ability to function, as well as perform my caretaking responsibilities.

Doug has referred me to the Mayo Clinic Gastroenterology Department, where I can consult with IBS specialists. However, the cost may be prohibitive: Chuck’s care, air fare, lodging, daily expenses and, of course, out-of-pocket medical costs. We live, just barely, on Chuck’s Social Security Disability Income, and I refuse to go into debt again after paying it all off last year. What little we had in savings has been depleted by some recent, major house repairs, and I hesitate to dip into what little is left, in case I need it for an emergency.

Being solely responsible another person is challenging enough without being sick. Plus, I have to think of the future: I’ll be taking care of Chuck indefinitely; I may have to (try to) go back to work someday. But how will I manage to hold a job if I can’t show up? My hard-won peace of mind is under siege. I want to feel and to be well, and I believe the best way for me to do so is to consult with the best doctors in the world.

If you’ve read this far and want to help, I’ve set up another Go Fund Me to defray the cost of the Mayo Clinic endeavor. Here’s an approximate breakdown of expenses:

Respite Care for Chuck: $1,000

Airfare: $500

Lodging: $600

Out-of-pocket medical: up to $3,000

TOTAL: About $5,000

If you are still reading and want to help, I have started a fundraiser.

I have always appreciated the deluge of help, in any and all forms, from those who support me and done so in a sustained and consistent manner for so many years. Your combined efforts have saved us on many occasions. By the way, the anniversary of our stroke, which happened 12 years ago, is coming up on August 31, one week after our 23rd wedding anniversary.

Thank you for reading.

 

 

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Coming Soon

25 Oct

After a long hiatus during which I have been engaged in various endeavors, I have decided to turn my attention back to Stroke Happens: A Caretaker’s Memoir, which chronicles the story of my husband’s stroke and my transformation into his caretaker. I am preparing the final draft to publish on Amazon within the next month, after recently realizing that I still want to share our story.

I took a long break from Stroke Happens after I finished the last draft and started trying to find a publisher. I queried at least 30; each time, I got a form rejection letter or no response. Finally, some nice editor actually took the time to write and tell me that, in all likelihood, no one would look at it unless I had a literary agent. I wondered, then, “Why do these publishers have submission guidelines on their websites if they weren’t even going to look at submissions?” (I still don’t have an answer.)

I had grown so frustrated by that time that I put down Stroke Happens and began exploring other creative (and money-making) avenues. I have been growing my dog-training business; writing a series of articles for South Carolina Wildlife Federation; working as a part-time writer for Clemson University; and, of course, continuing to care for my husband.

Although I have always had reservations about self-publishing, I realized I have nothing to prove, having already had a book published: The Chattooga River: A Natural and Cultural History (The History Press 2013, which can be purchased on Amazon). I started revising, yet again, and plan to have it up by November 22.

Stroke Happens will describe the journey of my husband and myself after he suffered a massive stroke in 2007, at the age of 56, and how we coped with the challenges that followed. I hope anyone who reads this blog, especially if you have been affected by stroke, will read it. It is a story of hope, recovery, acceptance, love, friendship, and much more.

Until then, I will be posting on this blog whenever time permits. Stay tuned for further developments! And thank you for reading.

Stroke Happens?

6 Feb

 

I’ve just completed what I hope is the final draft of my manuscript of Stroke Happens: A Caretaker’s Story, which differs greatly from the first attempt. A former professor has looked at it and thinks it’s ready for a publisher and/or literary agent. I’ve submitted it, in this and a former version, to dozens of publishers and either received rejections or no answer. I’ve registered for a writer’s conference in Atlanta, where I will have 15 minutes with a publisher, who will look at the first few chapters; and an agent, who will read my proposal. I’ve blogging again and I plan to create a Facebook page to publicize it. Still, I have more to do! I need to write articles and give presentations and/or interviews, all a part of building a platform. I didn’t know it was going to be this much work, or I might not have started. But that’s not true. When I began writing Stroke Happens, the words gushed out of me; I had no choice. I started writing and didn’t stop for three months. Every day, I sat feverishly in front of the computer and tip-tapped away at the keys until I had about 30,000 words. Then no publisher wanted it, so I filed it away.

Three years later, and a move back to Pendleton, I get an offer to write a different book. I wasn’t as intimidated as I might have been, since I already had written 30,000 words and knew about how long it would take and that I could do it. So now I have a book, The Chattooga River: A Natural and Cultural History. I thought it might impress someone in the publishing world. No.

I never thought I’d say this, but I hope Stroke Happens.

Moving On

24 Nov

    The other day I announced to my email list that I had started a blog. I received a message from a friend congratulating me on my “blob.” I laughed, but when I sat down to write today, I froze. I couldn’t decide what to write about. I felt like a blob, indeed, hands poised over the keyboard, waiting for the words to come. I felt I needed to write about Chuck’s stroke, therapy, recovery or how I coped with it. But I didn’t feel moved, so I pondered on it for a while. I think I understand, now.

     When Chuck had a stroke, it took over my life. However, six years have passed, and I have moved on. It’s now hard to recall much of the experience or my feelings during that time. The stress of that time blurred my memory of events. So how to proceed? Maybe this post should relate how I moved on, because I do remember a time when I thought I never would be able to. I was every bit a victim of stroke, albeit in a different way, as Chuck. While I would not describe myself as “happy,” exactly, I have found a level of contentment and fulfillment I never thought possible. Maybe I should describe how I got there.

     The first step, obviously, was to get through the crisis itself. Next was to get Chuck what he needed in terms of continued therapy, which absorbed most of my energy for the first year and was driven in part by my desire for his complete recovery. When I realized that was not possible, I then had to accept it, which was one of the hardest things I’ve ever had to do. I had to let go of the idea of Chuck as he was before the stroke, a very painful process because that was the prize I had been reaching toward, the finish line that had kept me in the race.

      I spent the next couple of years avoiding reality by moving, twice. We left our small town to move a small city, and then back again. I missed having access to my form of therapy: hiking in the woods, swimming in the lake, walking in the country. However, during our sojourn to the city I received some gifts I would not have otherwise. The first was yoga. The second was being able to be present for a dying friend. The last was rediscovering my love of writing, which has helped me redefine my identity. I started writing again, and five years later I wrote a book. I have a manuscript in progress and an idea for the next project simmering on the back burner.

     My point is that I had to actively seek contentment and fulfillment, not wait for them to find me. For a time, I lost myself in the role of caretaker and as a victim, ultimately not enough for me. I had to find myself, or more specifically the self I had become, and merge it with my new role as Chuck’s caretaker. The act of writing, or finding my voice, enabled me to move on while remaining in place.

    

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